Discussion of public health and health care policy, from a public health perspective. The U.S. spends more on medical services than any other country, but we get less for it. Major reasons include lack of universal access, unequal treatment, and underinvestment in public health and social welfare. We will critically examine the economics, politics and sociology of health and illness in the U.S. and the world.

Tuesday, September 16, 2008

Democratization of Science Part II:

Community Based Participatory Research

And now we come to the actual conduct of research. Community Based Participatory Research (CBPR) is a concept – a movement really – that is grounded mostly in environmental and other public health research that focuses on specific geographic areas or clearly definable groups of people. The Large Hadron Collider or Mars lander missions probably cannot be conducted according to CBPR principles, although they could devote even more resources than they do to public programming and dialogue. The job description of principal investigators for such Big Science projects should be 50% public engagement, in my view.

But the potential role for broad public involvement, not only setting overall priorities, and being informed about results, but in directly shaping specific aims of individual research projects, study design, and the analysis of results is much stronger when the research is actually about them. First and foremost, people are likely to be more motivated to participate. Second, what questions matter the most depends a lot on what matters to them, as does the most meaningful and useful interpretation of results. Third, the use to which new knowledge is put, the possible impacts on public policy or practices, depends on what happens after the findings are published, and that hinges on politics.

So it sounds like a good idea for academic investigators to partner with community groups and interested citizens under many circumstances. But there are many problems and pitfalls in doing so, and I think that universities and scholars, if we’re serious about democracy, have to be committed to understanding what they are, continually vigilant, and working actively to overcome them.

University mucketymucks value CBPR only to the extent that they are getting a payoff for their investment. Mostly that means bringing in research grants, although I suppose they give a bit of extra credit for more amorphous stuff like favorable publicity. They no doubt have some vague idea that CBPR wins good will from the indigenous people, to whatever extent they value that, but they aren’t particularly hot to provide resources in support of that objective.

The agencies that provide funding for research give money to academic investigators, not to community groups. Universities apply for the funding, universities receive the funding awards, and universities dole out whatever (almost always comparatively small amounts) go to their community “partners.” In this situation, of course, they aren’t really partners, they’re sidekicks.

Even when they explicitly claim to fund CBPR, the funding agencies judge projects by criteria that are different from the criteria by which community residents and community organizations value research. These are the same criteria by which academic investigators are judged, and reports are reviewed for publication. For some funders, some scholars, and some journals, community participation might sweeten the pot a bit, but it’s no substitute for the main stuff. Funders and the academic community with which they are completely incestuous value:

· Hypothesis driven research. Communities just want their questions answered.· Generalizability. Communities want to understand their specific, local, unique circumstances.· Established theoretical frameworks. Communities approach problems in the light of direct experience and felt need.· Priority given to evidentiary rigor, requiring such tools as probability sampling and control groups. Communities are interested in fairness and inclusion, which is frequently in conflict.· Specialized language and arcane modes of organizing discourse. Communities want accessibility and common sense reasoning.· High value placed on credentials, titles (take it from an Assistant Professor), and institutional prestige. Nuff said.

So, if you want the money, you have to go to them with as much as you can of the first item in each bullet. The second items just get in the way.

Furthermore, obviously, the university has vastly more resources than typical CBOs. The university can invest in years-long processes of developing, revising and resubmitting proposals, but it’s very difficult for CBOs to come along for that ride while sucking fumes all the way. Community representatives can give their input to the process of developing projects, but ultimately, they have to defer to the academic investigators whose names are on the proposals as PIs and who draw more than decent salaries (by community standards) throughout the process, in part to go through the process of seeking research funding.

Once the money comes in, the PI is still the boss, and still gets much more of his or her time supported by the grant, and it’s still his or her main job, whereas it’s a secondary responsibility for the CBO staff and yup, volunteers. Meanwhile, however well the investigators understand all this, and however committed they are to greater equality and real partnership, they’re being judged by tenure and promotion committees, and academic officials, who do not share their values. No matter what, they have to publish in peer-reviewed academic journals, and bring in more research dollars. Popular publication is not only not valued, but can actually be held against them.

There aren’t necessarily any definitive solutions to all this available to us, but to me, it does point to one clear necessity. For CBPR to be fully realized, it needs resources which are not controlled by the university and not dependent on the traditional criteria for funding academic investigation. It needs resources which are truly controlled by a partnership in which community players are equal, and which can provide financial support for community involvement at every step of the way, from identifying questions, to designing studies, to developing proposals, to carrying out research, to analyzing findings, to communicating results. We know that we will have to satisfy the traditional academic criteria at every step, but we can do our best to find common ground with the community criteria along the way if and only if the communities are adequately supported to advocate for themselves.

This is not the way CBPR typically happens today. If funders are serious about it, they will have to change the way they do business.